A friend of mine has recently found herself being thrust into the role of Caregiver and, as we have chatted about it, I have been able to share some of what I learned from my own experiences as caregiver to my late husband.
At the end of one of our chats, she suggested I write a blog post about Curiosity and Caregiving.
I didn’t see the connection
Quite honestly, I didn’t see it at first.
But the more I thought about my experiences, and about what we had been discussing, the more I saw a connection. I had simply been too close to it to notice it before.
She got me curious about the connection between curiosity and caregiving!
A different type of curiosity
Was curiosity involved when I was a Caregiver? Not the lighthearted, childlike quality we usually associate with curiosity. But I certainly did a lot of questioning and wondering, and these are definitely central to curiosity.
Not the railing-at-the-universe kind of questioning (Why me? Why Bruce?); that’s just not part of my vocabulary.
Searching for tools
But as his health began to deteriorate, I began searching for information. Thank Heaven for the internet, which made it possible for me to research Bruce’s condition and possible treatments, and to look for resources for myself. They say “knowledge is power,” and my need for information, my curiosity, drove me to search for knowledge that helped me to not feel powerless in the situation.
Is being desperate for answers curiosity? Yes, I suppose so. One type, anyway.
Searching for causes
As his health began to deteriorate, it also began to affect his personality. And I certainly had lots of questions about that. Why was he becoming so short-tempered (which was totally unlike him)? Was it me? Did he not love me anymore? I didn’t really believe that was the case. But I wondered, I questioned, and I came to several theories.
One theory was that his normally high pain tolerance wasn’t high enough anymore, and his pain level was exceeding his ability to cope with it. And the methods he had learned for coping with chronic pain were no longer working. For example, he told me long ago that he had learned to focus his attention on something exterior to him and send the pain to that; I suspected that melting doorknobs wasn’t working any longer.
Second, I began to suspect that, in addition to the physical pain he was in, part of what I was seeing was possibly related to some form of dementia. The research I had been doing kept turning up articles on coping with angry outbursts in people with dementia, and they described what I had been observing. This helped me to not be surprised when Bruce told me he was concerned about early-onset Alzheimer’s. I was almost relieved when he shared his concerns with me and told me about an episode that had particularly frightened him.
What did surprise me was when he told me he was afraid I would leave him now that I knew. And I realized that this fear was part of what was driving the behaviors that were part of a Bruce I didn’t recognize.
So when my friend came to me in great pain and frustration with the rude behavior of a friend for whom she has become a caregiver, I was able to help her wonder whether fear might be at the base of that behavior – fear of abandonment, fear about her deteriorating condition, fear of, well, everything.
Don’t get me wrong; this doesn’t make bad behavior acceptable. But it does make it easier to understand, and this can make it easier to deal with.
Searching for new approaches
This is another area where curiosity is important in caregiving: Wondering what is happening with the other person, rather than judging them (“Oh, they’re just ______”) or taking it personally. Being willing to walk in their shoes for a moment.
And this is where curiosity and compassion go hand in hand. Curiosity must be non-judgmental and compassionate so that, as a caregiver, I can wonder, “Is s/he afraid? I probably would be. Maybe it would help set him/her at ease if I tried this.” And sometimes the this is just asking rather than assuming.
Curiosity, Tools and Compassion
Being a caregiver for my husband was both wonderful and horrible. And, in retrospect, curiosity did help me through it. By utilizing my curiosity to find information and resources, I was able to do (at least some of the time) what they tell in you in the airline safety talks: Put on your own oxygen mask before attempting to help the person next to you.
It also gave me tools to give good care and be a better advocate with the medical professionals we encountered.
Perhaps most importantly, curiosity, coupled with compassion, also helped me to walk in Bruce’s shoes at times and to adjust my words and actions and pay attention to whether that helped or not. It also helped me to be compassionate with myself when I was tired or frustrated or scared or felt unappreciated or didn’t live up to my own expectations.
Funny, but until my friend asked me about it, I had not drawn a connection between curiosity and caregiving. It sheds some new light on my experience, and if you are in a caregiving situation, I hope it sheds some light on yours as well.
Whether you are the caregiver for an aging parent, a spouse, a sibling, child, or friend, be gentle with yourself as well as with them. Look at the situation through the lens of curiosity; it can help you find resources, and it may help you to shift the dynamics of a difficult situation. Looking back on it now, I can say that it did for me.
=>Here is a link to a resource I found tremendously helpful when I was in need of resources: http://www.caregiver.com
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